I have not kept this blog in order, however, the following several posts are from 2011 in descending order starting with my diagnosis in 8/2011. So if you're interested in my HE experience particularly, read the red copy backward, from August 2011 thru November 2011:
November 29, 2011, MY FIRST ENDOCRINOLOGIST
My new endocrinologist didn’t readily accept that I had HE.
He said it was way too rare and that my thyroid alone could have caused my
latest symptoms. I was skeptical. What about all those other times when I had
unexplained occurrences? I didn’t go into all that at the time; I felt he
wasn’t interested. He did say that I shouldn’t have blood work done so soon
after steroid treatment because the steroids could cause a false TSH reading.
So I postponed my lab appointment.
November 18, 2011: LOST IN JERSEY
Well we got lost trying to find the endocrinologist the
first time. They had said right across from Kennedy Memorial. Who knew there were two Kennedy Hospitals in
our area. Naturally we wasted a day by
going to the wrong one. I missed that important distinction. It wasn’t the GPS’
fault; it led us in the right direction, so of course, we shut it off. My
husband wasn’t on his game either that day.
November 21, 2011: IN-HOME IV TREATMENTS
I had the first one this morning. A nurse, Deana, came to my
home and gave me an IV with another gram of methylprednisolone in 250 ml
solution; it took about an hour once I was hooked up. My doc said my insurance
would pay for the in-home care, and I wouldn’t need to go to the hospital this
time. I did get terribly lightheaded for several minutes, but Deana said that
could happen and needn’t cause alarm. I get two more treatments in the next 48
hours (the nurse showed my husband how to administer the solution now that the
IV is in) and then another blood test to see if it helped decrease my titer.
Maybe this is it? But Dr. K. warned that it may be a monthly maintenance
procedure; she’s not sure. We’ll see; at least I’ll have this heplock out by
Thanksgiving Day! And no hospital! That’s something to be thankful for!
November 10, 2011: TEST YOUR TITERS.
So I’m not ‘normal’ yet; was I ever? (there’s the next
blog!) My titer is 92. Yes, another new word….basically the amount of
antibodies in my blood. At the beginning of all this it was in the 200s, so
measurable progress was definitely made. However, according to Dr. K, I
shouldn’t have a titer at all! Who knew?
I met with her today and told her my vision was still frequently
doubled and my stamina wasn’t what it used to be, but other than that I felt
pretty good! And though I wasn’t depressed any longer (a huge and very
noticeable benefit), I didn’t trust my ability to resume working. She said she
would support my application for disability, but suggested that I get input
from my neural psychologist first because that would strengthen my position as
far as the government was concerned. But that appointment wasn’t scheduled
until December 7. Either way, she said, HE is a chronic condition, and it seemed
that I would require further treatment with either more steroids or IVIG. So
off to Quest again was I for another blood test!
After Hahnemann: FIRST FOLLOW UP, 9-2011
Still showing signs I shouldn’t be. Balance isn’t strong,
vision is still doubled; urine infection isn’t gone yet, but overall, I felt
decent. I was still undergoing a sense of euphoric relief from my experience,
so I was a happy camper.
Letter to my ex boss
LEAVING DAY
I was headed home today, September 12, my hubby’s birthday.
But I had something I had to do first; write a letter.
ON DISPLAY
An unfamiliar woman walked in my room pushing an empty
wheelchair and asked “Are you ready?” It didn’t register with me at first, but
then I figured it out; she was there to take me to the Grand Round, a weekly
meeting for the neurology staff at the hospital.
IVIG
BLOOD PATCH
HEADACHES
LUMBAR PUNCTURE
VISITORS
STERIODS, HEART MONITOR??
DAILY BLOOD PICKS, PRESSURE, TAKE BLOOD
STAFF
TEACHING HOSPITAL
Job loss
FITNESS FIT I told
my trainer I couldn’t do this. I was on my back and had a weight in my right
hand, which I was holding over my head parallel to the floor. He encouraged me
and finally I strained enough and completed the situp. On my third try, my head
on the floor, I began to feel dizzy. I stayed put for several seconds and my
trainer offered to help me up. I tried to stand but before I got there, I
vomited all over poor Arnez. He and another gym employee helped me to a chair
and I sat but I was shaking so much, I couldn’t take my glasses off, or hold
the water bottle they gave me. They called my husband to pick me up and we went
to the emergency room of hospital I was scheduled to enter the following
Monday.
GYN first
OK. I didn’t actually find her. I was sent to her. My GYN
saw that something was wrong with me during my routine check-up, which occurred
one week after my lay-off. He told me I needed two things: a therapist and a
neurologist. He had reason; I was crying in his office!
Fortunately, he made an appointment for me with a
neurologist in his practice and his office called and told me I was scheduled to
see a Dr. K at Hahnemann Univ. Hospital. The appointment was made without my
input, and that was a good thing because I had no intention of consulting specialist. I thought I was just very depressed…again. A few weeks later, I
would have another neurologist at Hahnemann tell me she didn’t think I was
depressed at all. It was a time of discovery for me and the neurology
department.
H.E. SUSPICION
In fact, upon seeing Dr. K, I told her I was very depressed
and seeing her needlessly. She firmly told me, she was the doctor, and quickly shut
me up. After I scheduled and had two MRIs, an EEG, and several blood tests, she
called and told me I was not losing my mind. She suspected I had HE, a very
rare, often misdiagnosed, under-diagnosed, or wrongly dismissed condition that
people with hypothyroidism were prone to, and that I would have to spend a few
days in the hospital. I cried as I was wont to do, but this time with a sense
of relief.
And what a relief. A feeling of calm floated down on me. It
was immediate. It was delicious! I suddenly felt that living like I had been
for so long was all a mistake; my body had made a mistake. It wasn’t me, my
consciousness; it was my physical being! What a wonderful, long overdue
revelation. It was, it turned out, only 16 years late!
5 DAYS OFF
Dr. K. said to check in the hospital on Aug. 31, but just 5
days before that I ended up in Hahnemann’s ER. I had been at the gym and my
trainer was showing me a new exercise; I had a hard time and only managed a few
reps when I got very, very dizzy, even though I was lying down. I stopped and
laid still for a few minutes and when my trainer helped me stand, I vomited all
over him! He put me in a chair, and got me some water, but my hands were
shaking so much I couldn’t hold the bottle. They called my husband and he
picked me up and took me to Hahnemann’s ER.
THE FIRST TIME??
The day before I gave birth to my son 16 years ago was the
first real episode of Hashimoto’s Encephalitis I experienced; only they did not
define it as such. Few medical specialists knew about it then; the neurologist
defined it as a pregnancy migraine! My right side of my body had gone numb, and
I lost the ability to verbally identify objects placed in front of me. I was in
Jefferson at that time, a teaching hospital. So I couldn’t identify that pen,
or paper sheet, or paperclip or whatever held up before me numerous times. Not
an experience one is likely to forget. The next day, as I was ready to leave
the hospital, labor pains began and I had my son that day, September 26, 1995.
Afterward, my primary doctor diagnosed me with
hypothydroism, a condition many women develop after pregnancy. I’ve been taking
Synthyroid or Levoxyl or Thyroxine every morning since.
AUGUST 2011,
ON THE WAY TO DIAGNOSIS
I was 55 and unemployed for the third time in my career. My most recent lay-off had traumatized me and left me depressed, anxious, frightened, angry, confused, and disoriented. I had spent more than a year in a job that I was fairly sure had originally made me that way, in addition to a family situation that was deteriorating. I felt like I was having a nervous breakdown. So I cried a lot, ate little, and wondered if not living would be preferable to living like I was. But instead of contemplating this question very long, I fortunately ended up in the hospital.
It was the most satisfying experience I had had in years!
And perhaps the most educational. I was diagnosed with Hashimoto’s Encephalitis. I had never heard of it, and at that time, neither had most doctors. Luckily, I had found one specialist who had.
